Need Advise For Figuring Out Treatment For Back Pain

[kclynn]

My son has had back pain ever since he has been diagnosed with pots. It has flared up from time to time. Last year I got his gp to send him for physical therapy but it never helped one bit. The Drs have never paid much attention to it even though I have told everyone. But now it is really bad. I have had him to a rheumatologist who took xrays of his lower back even though most of the pain was upper and blood tests and then referred him to a pain clinic. Wasn't sure we had investigated enough so took him to his gp. She actually gave him a very thorough exam of his spine and found several spots where he really jumped with agony and several other significant flinches. She thinks he has at least 3 pinched nerves, sent him for an mri which was negative. Now referring him to a neurosurgeon and pain clinic. I know that it will take weeks to get into see anyone. In the meantime they refuse to give him any pain meds. He is taking Mobic 15 mg and can't take any other anti inflammatory with it. I hate to see him yelling in pain at night. Sometimes its not so bad and he can go to school, other times he is hurting too bad to sit in school. It always seems to hurt more at night when he sits and relaxes. If he keeps moving it seems to help.

His pain is along both sides of his spine, top of his shoulders and neck, and lower back along his hips. Last week the worst was middle upper spine and the last two days lower and above the hips is the worst.

I was wondering if anyone here has had similiar back pain that is associated with thier pots? I know the Drs. need to figure out the source of this but I want to be sure I am getting him to the right Drs. that would know.

Thanks!

[ramakentesh]

As I often tell people, I developed ankylosing spondylitis and pots at the same time. Treatment is nsaids or anti tnf alpha - pain worse at night and in morning. Better while moving around.

diagnosed by gene test or scan of sacroiliac joints.

[ramakentesh]

Stiffness often also present. Swimming helped.

[issie]

I have terrible back and neck pain. Runs in my family. I also have EDS and lots of arthritis connected to that. Lots of degeneration of vertebrae and things not staying in place. I agree that swimming helps. I'm addressing the autoimmune issues at the moment. I use Turmeric and Astaxanthin and these things also help the pain and inflammation factor. I'm not supposed to use Advil because of my kidneys. But, that used to would help. I so know about pain ---so sorry he is having to deal with this too.

Issie

[Katybug]

I had upper, mid, and low back spasms for over a year when I was nineteen and no one could figure out why. It turned out I had a severely subluxated tailbone (coccyx). My body was trying to hold the weight up off my tailbone area and all the microcontractions of the muscles finally caused the spasms. An osteopath was the person that finally got to the root of the problem.

Then, mid-20's, I slipped the disc between L4-L5 and it rubs my sciatic nerve. Celebrex (NSAID) helped me tremendously with the nerve pain. If they will try that (as opposed to an opiate type pain Med) before you get to the neurosurgeon or pain clinic, he may get some relief. I also use: ice packs, heating pads, Epsom salt baths, and a cushion that is wedged and has a "U" cut out of the back that relieves the pressure on the spinal column. If I sit someplace without the cushion I really feel it (like the horrible chairs they have in doctor's offices.) There is also a homeopathic cream you can order online (some homeopathic pharmacies carry it too) called Traumeel. It has a long list of homeopathics mixed together. You can choose cream or gel formulation. I have very sensitive EDS and MCAS skin, and it does not cause me any irritation but works on all sorts of soft tissue and nerve pain. It doesn't work as a local anesthetic, it is more of an anti-inflammatory.

[kclynn]

Would the spondylitis show up in an xray? That is what the rheumy was looking for I think.

Lots of things to consider and think about. Katybug, can you imagine what it might take to get a highschool boy to sit on a special cushion in class?

[Katybug]

:-) Yes, I can because I wouldn't use it when I went to class in college ....dumb pride. :-) But, he may be willing to sit on it at home, especially in the evening when he is so painful. They are inexpensive, so even a few hours in the evening is worth the cost (less than $30). But, I wouldn't place my money on him using it at school. Lol!

[issie]

Would the spondylitis show up in an xray? That is what the rheumy was looking for I think.

Lots of things to consider and think about. Katybug, can you imagine what it might take to get a highschool boy to sit on a special cushion in class?

Yes, that's what my rhummy looked at. It starts in the lower back - sacroiliac area. The doc said they will first notice the changes starting there. I hope this isn't his problem. But, if it is - then at least you will have a direction to look into ----autoimmune. They are not sure what triggers it for some - even if there is an inherited gene. Not all with the gene will have symptoms.

Issie

[looneymom]

It will show up in a MRI. My son has complained of lower back pain for awhile. He had a mri about two years ago that suggested this possibility. However, no doctor took it very serously. He was just 11 then and complained he hurt everywhere. Right now, he is currently being weaned off clonazepam. Since doing this, his back pain is worse to the point, he is rocking back and forth. If you can get a doctor to help with the pain, good for you. There some natural supplements posted for neuropathy on the forum. Tumeric and ginger. Hope you get some answers soon.

[Christy_D]

Sorry to see your son is still suffering. My daughter has back pain, she is hypermobile. She takes Tramadol for her pain without any problem. It is really tough trying to get high school boys to do stuff that is good for them at home much less in public.

Christy

[Relax86]

Postural stressors, and being sedentary can predispose people to back pain ~ especially mid back pain. Unless I misread the post it would be hard for me to believe you could palpate 3 pinched nerves or suspect pinch nerves based on what sounds like trigger point pain. Getting xrays of the right part of his spine would be a good start. Good luck.

[ramakentesh]

Would the spondylitis show up in an xray? That is what the rheumy was looking for I think.

Lots of things to consider and think about. Katybug, can you imagine what it might take to get a highschool boy to sit on a special cushion in class?

Yeah it would be embarrassing. that kind of pain sounds like AS. It can take two years before radiological signs come up. there is a blood test for HLA B27. Hope it isnt ank spond though ofcourse.

[issie]

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[issie]

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[kclynn]

Issie, I am the same way. Dr. prescribed me 50mg 4 times a day!! I didn't like the way it made me feel, but then I thought to try 1/2 dose which helps and I take maybe 1 a day depending on pain and if I'm going anywhere.

Rama, I can see from descriptions how this might be a possibility. I am also thinking maybe myofacial trigger points? Sometimes when he might be not having much pain, if I accidently rub a spot on his shoulders or back he really reacts and then the pain stays. I was wondering about Fibro, that is my issue and when I was going over the spots they check for fibro he also seemed to have points that hurt more. I'm not a Dr. so beyond my suspicions I don't know. Being a 17 yr old boy makes it more difficult for Drs. to think Fibro...

[issie]

My first DX with pain was FMS and then AS and then at the same time EDS. So, I'd look into those things. I think that maybe you can have all three. But, a lot of what they thought was FMS was EDS related. With the spinal pain,with me, it's probably AS and EDS related due to arthritis that you get at a very early age. Osteo Arthritis is a big problem with EDS.

Issie

[Katybug]

Kcmom,

I have had lots of myofascial trigger point therapy (migraines, horse riding injuries, subluxed tailbone, slipped lumbar disc) and rubbing a trigger point (unless you are truly digging into it and being rough) should not trigger other pain. In fact, if you come across a trigger point and are gently rubbing it (which is what moms are usually so special at :-)) it should help alleviate pain at the trigger point as well as some referred pain in most cases. For example, releasing a trigger point in my calf muscles would often help my back. Releasing a point in my neck would often help migraine as well as upper and midback pain. I can't say for sure obviously, but what you are describing doesn't sound like the root cause is trigger points. He may have lots of trigger point issues because he is doing weird things to compensate for the pain and thereby creating the microspasms that cause trigger points to develop, but it doesn't sound like a root cause. But, if you find he has a lot of trigger point issues, there is a therapy called dry needling that is very effective at realeasing trigger points and it works faster and lasts longer than manual release of the points. It is similar to acupuncture but it uses musculoskeletal points instead of using organ system based points to insert the needles. If you want to know more about it let me know.

[kclynn]

Neurosurgeon won't see him because all his films are normal. Dr is referring him to a pain clinic and also psych because he had a numb tongue last night and she says that is a sign of anxiety. Do I sigh or do I cry?? I just want someone to help him.

[issie]

Neurosurgeon won't see him because all his films are normal. Dr is referring him to a pain clinic and also psych because he had a numb tongue last night and she says that is a sign of anxiety. Do I sigh or do I cry?? I just want someone to help him.

Find a new doctor is what you do and fight for him. The numb tongue could be an allergic reaction and/or mast cell problem. Was he eval. for EDS?

Issie

[kclynn]

I have asked many, many Drs. and they never feel its a possibility. He is mildly flexible and doesn't have the "typical appearance". Dr. Abdallah in VA felt he does or could have some mast cell issue (flushing, rashes and dermagraphism (sp?) We don't see him anymore, though, long way to travel.

[issie]

Maybe, you could give him a call and let him know what happened and he may know someone closer by that you could see.

Issie

[Katybug]

EDS patients don't have a "typical appearance ". We comedy in all shapes and sizes. The docs may be thinking of Marfan's Syndrome which is a connective tissue disease as well and patients are usually tall and thin. It is a differential dx for EDS. Does your insurance require referrals? If not, you could approach a geneticist on your own to rule out EDS. Flexibility is only one of the many symptoms used to assess EDS. If you want comprehensive info on EDS, www.ednf.org is a good resource.

I wanted to tell you about a workbook Dr. Francomano recommended to me called, "The Trigger Point Therapy Workbook" by Clair Davies. It teaches you how to work trigger points yourself. . I thought you might be interested. You can buy it on Amazon and it not expensive. It has very good illustrations for how to work each muscle group.

[looneymom]

KCmom,

Have you talked to the doctor about running the blood test? From what I understand, your family physican can even order this one. The cardiologist looked at my son's last mri and decided to have the blood test ran. If this shows up positive, the cardiologist said this would change my son's POTS treatment.

[kclynn]

Going to a chiropractor while waiting the 6 plus weeks to get into the pain clinic. He is highly recommended. The neuorsurgeon won't see him because all his films are normal.

Katybug will look into that workbook. Thanks